Research led by Mayo Clinic Establishes Mortality Risk for Refractory Celiac Disease Patients

August 8, 2016

ROCHESTER, Minn — An international research team led by Mayo Clinic has developed a first-of-its-kind model to predict mortality in patients suffering from celiac disease (CD).

The study, headed by Alberto Rubio-Tapia, M.D., Mayo Clinic gastroenterologist, established a five-year survival estimate for patients suffering from refractory celiac disease, a rare and most severe form of the disorder.

“Celiac disease is characterized by intestinal damage induced by the ingestion of gluten in susceptible individuals,” the study states. “Gluten-free diet is an effective therapy for most patients.”

Gluten is a protein found in common grains, including wheat, rye and barley. The protein can cause a reaction that damages the lining of the small intestine in CD sufferers. For the small percentage of patients still experiencing moderate to severe symptoms after cutting gluten from their diet, it’s important to establish a baseline mortality risk — the purpose of this research — to help manage care.

The study followed 232 multinational patients with refractory CD through seven treatment centers in the U.S., Europe and South America. The median age of subjects was 53 years old and 64 percent were women.

Over a five-year follow-up period, 51 of the patients (22 percent) died, with refractory CD listed as the most common cause of death. Variables, including age of the patient when diagnosed, serum albumin protein levels and presence of specific abnormal lymphocytes, were weighted to calculate the five-year mortality estimate.